Team FARA in NYC -TCS New York City Marathon

On Sunday, November 6, 2016, five members representing TEAM FARA ran the New York City Marathon to raise money for the Friedreich’s Ataxia Research Alliance. Team members included Felicia DeRosa, Jamie Young, Lucy Braid, Dr. Sathiji Nageshwaran and myself, Tom Batta. All of us share a connection to the FAmily and my connection is my 13 year old daughter, Ryanne, who was diagnosed with FA at age 8. In the last five years since the confirmation of FA, our family has learned to slow down and take one day at a time. We make every effort to remain present in the moment. We know the challenges of FA that lie ahead, but we are taking a “that is then” and “this is now” approach to life. Last March Jaime reached out to me and asked if I wanted to run for FARA, and I jumped at the opportunity! We feel very blessed by our family and friends who supported our efforts and together, TEAMFARA NYC 2016 raised $39,434!

Saturday Nov 5th - 2016 TEAM FARA Dinner at Tony DiNapoli’s

Since the team had only “met” via email, we decided that dinner at Tony DiNapoli’s on Saturday night would be a good way to get acquainted and to enjoy a pre-race, family style Italian dinner. During dinner, Sath, who is part of the FA research team in London, provided an update on his recent work and his upcoming plans to continue research in Boston at Harvard. It was encouraging to hear firsthand the progress toward finding a cure for FA. Many of you may know Alison Avery from the FAmily; she recently moved to NYC and we were happy to have her join us for dinner and learn how she navigates life in the Big Apple.

Sunday Nov 6th - Race day

The 26.2 mile journey to Central Park began with a cannon blast and Frank Sinatra’s “New York, New York” cranked on the loud speakers. The start line is in Staten Island and heads across the Verrazano Bridge into Brooklyn, where the spectators are absolutely crazy! This is where I saw the first of many signs that said, “The Cubs did it, you can too.” HAHA! There were a lot of cheers for TEAMFARA as they read my shirt, providing me the extra motivation to get to the finish line.

An estimated one million spectators were cheering, partying, jamming live music and encouraging all the runners along the course as it weaved through Queens and across the Queensboro Bridge into Manhattan. Runners then head over to The Bronx briefly before turning back into Manhattan & Central Park. Large crowds of people yell enthusiastically all the way along the course and some spectators even ventured out onto the bridges to cheer. Runners from all over the world (132 countries represented) got to experience New York City at its finest. The sun was out and the temperature was perfect for running. What a great day!

Crossing the finish line of a marathon is a wonderful experience. I have run other marathons, including Boston, but in my opinion, there is no greater feeling than running a marathon for someone else. Finishing the NYC Marathon, knowing I ran it for Ryanne and all of those who are facing the challenges of with Friedreich’s Ataxia, made it even more meaningful.

It was an honor to represent TEAMFARA in NYC and we are truly humbled by the outpouring of prayers, love and support we have received from all of our family & friends. Although the NYC race has come and gone, we continue this journey with Friedreich’s Ataxia one day at a time.

About the Author

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.